Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

12/5/07

Down Syndrome Moms and Autism Moms: Holland and Beirut

The stark difference between the two is amazing. I know a few families who have children with Down Syndrome. Never once have I heard any of these moms complain about the self-help delays, speech issues, behavioral troubles, etc. Sure, they may, in confidence, discuss these topics. But, their tone when they do, is out of concern for their child--not themselves. It seems to be a common thread amongst Down Syndrome families to accept, love, & support their child. It also is apparent that these families do not allow a diagnosis to predict one's future success or happiness. These families go about their life, good days & bad, and prepare their children for life in the real world. They are hopeful about their children's future.

Quite a change from so many Autism families. The talk is often how tedious & tiring the autistic child's delays and behaviors are. The families so often speak of their "battle" against autism, and how their child will never achieve anything great. It is curious to me, how these sets of families can be so different.

A friend sent me "Welcome To Holland" early on, when my daughter was thought to possibly have a progressive brain disorder. It gave me hope, it's been hung up near my desk since. It wasn't until I was on an autism message board a while back, that I ever thought anyone might take issue with it (an inspirational & uplifting poem, not a political speech!). The mothers there, for the most part, took it apart & stomped on it. Someone posted this, which, according to them, was much more accurate for "us" Autism moms, "Welcome to Beirut." Interesting how even in poetry, a Down Syndrome mom chooses "Holland" to describe her life, an Autism mom chooses "Beirut."


And now just my free-write-babble (please do see article & video below!):
The mothers I know who have children with Down Syndrome, we have a lot in common. For one, my daughter's physical health issues & birth defects are common in children with Down Syndrome. Aside from that, we can relate to the developmental delays & behaviors. From the way I see it, Autism & Down Syndrome have a lot of similarities. Unfortunately, how so many families are perceiving and reacting to their child's autism is much different. I fear this may have been how Down Syndrome was perceived 40 years ago. Then came genetic testing, and in time, 90% of the Down Syndrome population never came to live. Was it then that people realized their importance in this world? Or was it something else? I am rambling & wondering. I fear that the research being put into Autism Speaks & the like, will lead to a genetic screening. I see genetic testing as a slippery slope, and often far too close to eugenics and Hitler. If you were wondering, I am neither pro-life nor pro-choice, I honestly haven't come to a decision yet. I have a lot of unanswered questions about both sides of the argument. But, just so you know, I am not coming at this from an anti-abortion perspective. No, my p.o.v. is "who the hell decided we should pick and choose what humans are acceptable to live with us?" And, when will it end?

I came across this article on Amanda Bagg's blog, which I came to while I was doing more research on eugenics. Thought I would share it:

"I am a person, not a disease."

&, this video:





If you have time, go to the page for this video to read the comments:

I see similarities here too, & perhaps the drum is beating louder now for an autistic movement such as the one for Down Syndrome.

5 comments:

abfh said...

You know, Beirut could be a lovely city if all the opposing factions would quit attacking each other and work together for the common good instead. So maybe there's something to that metaphor after all...

Here's my take on the Holland essay:
Welcome to Italy

S.L. said...

Great point! Thanks for posting the link. I'm going to write another entry on this issue. Take care!

Ettina said...

I don't know much about Beirut specifically, but most countries having really nasty civil wars and such lately are suffering from the lasting effects of colonialism. The only post-colonized countries that seem to be doing well are either those like Canada and US where the colonizers outnumber the colonized quite a lot, or countries that have had a bunch of very good people do a lot of work to undo the damage - eg South Africa.
Actually, post-colonized countries might be a good analogy for raising a child with PTSD or attachment disorder - you know they were just fine once, but then someone hurt them badly and now they're struggling a lot.

Anonymous said...

I have met mothers from both camps. But I do believe that the 'Beirut' analagy is specific to the difficult times. For the most part if parents are supported and are presented with the success stories of those parents who travelled this path before us their view is more in tune with Emily Perl Kingsley's. I have been astounded by the bigotry that exists in society. But equally I am continually amazed at the truly precious souls that are also around who outnumber the bigots but don't shout as loud. Some days it is difficult I admit but I would not change my son for anything. Through him we are learning and being challenged to become better parents and better people. My other two children are also better off and are able to learn life skills that they may not otherwise have had the opportunity to learn had we not been one of these families.

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